Well-Being, Disability, and the Mere-Difference Thesis. Jennifer Hawkins Duke University

Transcription

1 This paper is in the very early stages of development. Large chunks are still simply detailed outlines. I can, of course, fill these in verbally during the session, but I apologize in advance for its current form. Also, at this time most references are not included. Please do not cite or share. Well-Being, Disability, and the Mere-Difference Thesis Jennifer Hawkins Duke University The Mere-Difference Thesis: What It Is As most of you are probably aware, the topic of disability is highly contentious. Anyone wishing to speak or write about disability must usually begin with a series of careful definitions or statements clarifying the topic of discussion. And this is so because even among disability scholars there are deep disagreements about which human traits count as disabilities and, more generally, about how we should conceptualize the notion of disability itself. On the so-called medical model of disability, a disability is typically understood to be any stable trait of a person that departs from normal human species functioning. Although a departure from normal functioning need not be detrimental, the medical model does typically assume that disabilities are bad things to have. So, on this view, a disability is viewed as a natural defect, one that ideally could and should be cured. The social model of disability, however, famously insists that whether or not disabilities represent departures from normal function, they are not necessarily bad, and therefore not in need of a cure. Advocates of the social model claim that the bad effects of disability flow from the failure of society to properly accommodate disability and from the unfriendly and sometimes hostile attitudes of able-bodied persons towards those with disabilities. Recently, the philosopher Elizabeth Barnes coined the phrase meredifference thesis to describe a particularly pure and particularly strong version of the idea that seems to lie behind the social model. 1 In essence, the mere-difference thesis is the idea that, in and of itself, disability does not lead to any lowering of a person s well-being. If in fact people with disabilities typically have lower well-being than others, this fact can be entirely accounted for in terms of negative societal attitudes and failures of accommodation. Put another way, the mere difference thesis is the idea that in an ideal society having a disability would not in any way be predictive of differences in overall, lifetime welfare. From the standpoint of personal welfare it would be an entirely neutral trait. Barnes refers to views that deny this 1 Elizabeth Barnes, Valuing Disability, Causing Disability, Ethics 125: 1(2014):

2 neutrality as bad-difference views. These are views that insist that disability is typically bad for the person who has it independently of social conditions. Even in an ideal society that was free of prejudice and which had the resources and the will to make all necessary accommodations, disability would tend to lower welfare and would therefore still be something it would be worthwhile trying to eliminate or cure. The mere-difference thesis is fundamentally a thesis about well-being. But what precisely is well-being? Not everyone is familiar with the special way that philosophers use this term. For ordinary people the word well-being has strong associations with health, and perhaps also, more generally, with holistic modes of living that are thought to contribute to health. It is thus no accident that many bookstores have sections labeled well-being that group together books on proper diet, practical instruction for yoga enthusiasts and meditation manuals. Philosophers, however, use the term much more broadly to refer to a special kind of non-moral value, the kind of value under discussion when we talk about what would be good for a particular person, or what would benefit her or what would be in her best interests. Still, even once we get past associations with health, the term well-being can foster confusion. One problem is that the term seems to suggest something temporally limited. A person is said to have a certain level of well-being at a certain time or over a certain period of time. But the master concept that interests philosophers and guides their theorizing in this area is really the temporally extended notion of a good life. Lives are good in virtue of containing much that is good, in the sense of being good for the person whose life it is. So if a person has high well-being at a given time this is presumably because many things are good for her at that time, and we can say that a life uniformly high in well-being is a good life. Against this backdrop we can also make sense of the idea that part of a life might be good, as well as the idea of a good choice or good decision. A part of a life is good if there is much that is good for the individual during that part of her life. And a choice or decision is a good one for the individual if it furthers or contributes to her good. It might do so instrumentally (she might choose something that is a means to something good) or directly. And it might be good merely in virtue of contributing to the goodness of the moment or the goodness of a part of her life, or it might be good in the stronger sense of contributing to the overall value of her life as a whole. Finally, the term well-being can be misleading in a further sense. Well-being is a term of positive evaluation, and so draws our attention to the question of what makes a life (or a part of a life, or a choice) good. As philosophers, however, we should be interested not merely in what makes a life good, but in what makes a life bad as well. We should also want to be able to explain degrees of goodness and badness, for example, why a particular life is better or worse than another. To try and capture this neutrality I sometimes talk about prudential value or personal value, even though these terms are not as widely employed as well-being or welfare. There is no harm in any of these terms as long as we are clear about the topic, and in what follows I will use them all somewhat interchangeably. So to summarize: We are interested broadly in questions about what makes a life (or a

3 part of a life or a choice) good or bad or better or worse for the person living it. The mere-difference thesis then is a thesis about the relationship between disability and well-being in this expanded sense. It denies that disability in itself makes a life worse for the person living it. The debate about mere-difference is interesting in many respects, but one particular aspect of this debate fascinates me. Because the mere-difference thesis is a thesis about the relationship between disability and well-being, everything ultimately turns on what well-being is and whether disability lowers it. Yet, with a few exceptions, most participants in this debate have said little if anything about well-being itself. Indeed, many theorists go to some length to try to avoid saying anything about well-being. And it is this feature of the debate that both fascinates me and strikes me as bizarre. Barnes herself is a case in point. After introducing the mere-difference thesis, she goes on to examine arguments offered by (among others) Jeff McMahan and Peter Singer to the effect that acceptance of the mere-difference thesis would have counter-intuitive moral implications in certain cases. These authors have argued that if disability were really a mere-difference, it would then be morally permissible (in an ideal society) to cause an infant to have a disability, and likewise it would be morally permissible (again in an infant) to leave a curable disability in place. Yet we typically assume that even if prejudice were removed and accommodations were made in society, we would still be obligated to remove or fix disabilities if we could (assuming this to be painless and free of other negative effects) and we would still be obligated not to introduce disability (even if doing so is painless etc.) where it doesn t already exist. Whether or not these arguments succeed, it is interesting that the discussion skirts the issue of what well-being is. Barnes project is simply to try and show that these causal/removal arguments fail. But even if her arguments succeed, she would not thereby vindicate the mere-difference thesis, but would merely leave the truth of the thesis unresolved. To really make progress on this topic we must, I think, focus on well-being directly. Presumably some theorists shy away from the topic, because they assume that to go down that path would require fully resolving the topic of what well-being is. It would require developing and defending a theory of well-being (no small undertaking!). And even if they were to undertake this thankless task, it would be difficult or impossible to get enough people to accept the end product, so there would be little or no positive practical upshot. In addition, people may fear that because the topic of disability is so contested, there will be no way to find agreement on principles of well-being, because one s commitments at the practical level will drive one s choices in the theory of well-being. In other words the fear is that we do not have enough of an independent grasp on the essential features of human well-being to keep such a discussion from becoming thoroughly politicized. Naturally if you assume this, it will seem better to try to move forward in other terms. However, I remain more optimistic about our independent grasp on certain truths about human welfare. Moreover, I think it is possible to make progress

4 without developing or adopting anything like a full theory of well-being. What I hope to do here is to identify certain points in the theory of well-being around which there is relatively high consensus, and use these points to articulate a principled theoretical space within which practical debate about disability might proceed. I wish to show that we can leave certain questions open, even while restricting the debate in justifiable ways. Although the principles I suggest leave many questions open, they are by no means toothless. They allow us to make some progress. Minimally, once we get clearer about well-being, we will see that certain fairly common claims made in the literature turn out to be too simplistic. But the progress does not end there. Before moving on, however, I wish to acknowledge and briefly address two sorts of skepticism about my project that I have frequently encountered. First, many people are struck by how abstract and general the debate is (at least as discussed by someone like Barnes). Surely, one may think, the meredifference thesis can t be assessed as a general claim about all disabilities (?!). Even if some of the traits that have traditionally been viewed as disabilities are really welfare-neutral, others presumably are not. Many people are inclined to think it will depend on which trait you focus upon and that we should not try to say anything about disability in general. On this point I agree entirely, although I am aware that there are some people who want to make general claims. Some disability rights activists really do want to insist that all of the traits traditionally labeled as disabilities are in fact welfare-neutral. I myself suspect, however, that different traits will have quite different welfare impacts. For example, I am inclined to think that deafness in certain contexts is (or comes close to being) a mere-difference. For deaf children born to well-educated deaf parents, deafness may already be virtually welfare neutral, and I see no reason why it wouldn t be in an ideal society. 2 But many other traits I suspect would not be welfare-neutral even in an ideal society. The important point for my purposes here, however, is that accepting such a qualified view doesn t undermine the importance of my project. For it is still true that, if we are to make any progress in understanding which particular disabilities are (or are not) welfare neutral, we need to clarify the terms of the debate. And as I see it, this requires delving into the theory of well-being. There is a slightly different worry that people sometimes have. One could easily be forgiven for wondering why we should be interested in the question whether disabilities are welfare-neutral in the sense required here. After all, the issue is not whether disabilities are welfare-neutral in this society but whether they would be welfare-neutral in an ideal society, one in which there is no prejudice and one in which all of the proper accommodations have already been put in place. Parties on both sides of the debate acknowledge, however, that we are not living in an ideal society. So why should we consider this question at all? What urgency could 2 However, the case of deaf children born to hearing parents strikes me as more complex.

5 it possibly have, and why should we care? Shouldn t we instead turn our attention to the question of how to improve the lives of those among us now with disabilities? The answer is complicated. Of course we should pay attention to trying to improve the lives of people with disabilities now. But how we think about and understand disability has an impact on how we respond to it. People with disabilities worry not without cause that if people believe a certain trait will lower welfare no matter what that the trait is in and of itself a bad thing to have this will tend to undermine whatever motivation they have to make social progress. When it comes to choosing between working on better cures or working on social change, an individual s conception of disability and her beliefs about its basic relationship to well-being turn out to be important. If it is really true that there are disabled people among us who could, even now, be living quite good lives but are not, and if the sole explanation for this is social, this provides a particularly pure and intensely powerful argument for social change. And pure powerful arguments are the most effective. Unfortunately, it just is true that the degree to which the plight of the disabled grabs our attention and speaks to our conscience depends largely on the degree to which we think their plight is something we could solve. And answering that question leads us back to debating mere-difference. Ranking Lives and Thinking About Disability: Why Disability Advocates Might Not Need to Defend Mere-Difference This section is not yet written. In this section I will consider in more depth the motivations that lead people to try and answer an abstract question such as whether disability is mere difference, in particular what kinds of practical questions might seem to be influenced by a negative view of disability. I distinguish the question whether a particular trait tends to lower welfare somewhat and the question whether it tends to lower welfare significantly, and I suggest that the real focus for disability advocates should be on establishing that a particular disability does not, in and of itself, lower welfare significantly. For most practical purposes, establishing the truth of such a claim would be both (a) easier, and (b) practically sufficient to undermine certain ableist assumptions. For example, it would be sufficient to establish the permissibility of forgoing certain medical interventions in children designed to remove disability. How We Should Think About Well-Being for Practical Purposes What I want to do here is suggest some general principles for theorizing about wellbeing in the practical arena. I do not offer a specific theory of well-being. Nor do I claim that the principles I suggest should limit general philosophical debate about the nature of well-being the kind of debate that interests many philosophers (including myself). I simply assume that we need to limit our assumptions in the practical sphere in ways that are not required for more general philosophical theorizing. In what follows I hope to define the more narrow area within which

6 practical discussion of well-being should proceed, and convince you that my way of restricting the scope makes sense. I propose to introduce my principles by presenting them as flowing from what we have learned over time from debate about certain broad categories of theory. There is nothing necessary about this way of proceeding, but it has certain expository virtues. Most people, if they have any awareness of how philosophers think about well-being, are at least aware of the three-part taxonomy of views given by Derek Parfit (1984) and James Griffin (1986). According to Parfit and Griffin theories of welfare fall into three rough groupings: objective value theories, desire theories, and hedonistic theories. Although there are many problems with this categorization as it stands, it is good enough for my purposes here. In what follows I shall argue that we cannot assume the truth of any of these theories in the practical sphere, for they all at least in the simple forms in which they typically appear have far too many controversial implications. The truth lies somewhere in the middle. However, we can draw from these views certain general lessons that can be articulated as principles, and these can be viewed as setting legitimate constraints on practical theorizing about well-being. Lessons from Objective Value Theories (1) We should accept that facts about well-being are individually relative. They are sensitive to, and vary with, facts about our individual natures and individual circumstances. This is compatible with assuming there are truths about welfare. (2) Claims about well-being must preserve some sort of link with an individual s actual or hypothetical positive attitudes. If something is to count as good for a person there must be some relevant conditions under which she would appreciate that thing. Lessons from Desire Theories (3) Wellbeing is always well-being at a time, and well-being at a time is a function of facts about the individual at that time, either facts about her experiences and attitudes at that time or perhaps facts about the relationships she stands in at that time to things she cares about. This means, minimally, that prospective judgments of good are fallible. To form approximate judgments about how well off a person is at a time we need to ascertain various facts about her and her life at that time. (4) An individual s values the things (in a loose, abstract sense of thing where I have in mind objects, people, projects, goals, relationships, etc.) she cares about for their own sake are important to her welfare. We need not insist that everything a person values contributes to her welfare, but we must acknowledge that many of the things a person values will affect her welfare. Thus claims about welfare have to take an individual s values into account.

7 (5) For practical purposes the issue between those theorists who insist that welfare is entirely mental and those who insist that it is at least partly world-involving is moot. Once we allow that values matter, we don t need to decide, for practical purposes, whether all that matters is believing that the things you value are as you want them to be (which could happen inside an experience machine), or whether genuine benefit requires that things actually be as you want them to be. Lessons from Hedonism (6) Mental states matter, and they matter more than many theorists have traditionally allowed. First we need to move past simplistic views of what happiness is. It need not be superficial or short-lived, and it has great intrinsic value. Happiness also matters greatly extrinsically, as current research is showing. Because happiness is important, at least one thing to always consider is what the impact of various options or choices or changes would be on a person s happiness or capacity for happiness. (7) Suffering also matters. Suffering is not merely physical pain. It is also psychological. There is an important asymmetry in that people can typically agree more easily about what constitutes ill-being or being badly off than about what constitutes being well-off. This is not all, however, There is a further significant asymmetry, in that many people believe it is more important to eliminate or mitigate suffering than it is to try and improve the lives of those who are already decently well-off. Suffering is thus both more easily recognized and more widely seen as having moral significance and requiring moral action. This asymmetry should be emphasized and utilized. For example, it would be quite significant if we could establish that a certain condition or trait often or typically produced great suffering. That would be the strongest possible case for a bad-disability view, and any theorist, no matter what their view of well-being, would have to take such a claim very seriously. However, it is likely that very few such claims will turn out to be supportable, a fact which (if true) should be emphasized by disability theorists. Lessons? Some brief discussion of how to relate this theoretical space to empirical data on high self-reported quality of life. Such data is important but not decisive. Some interesting things to ask. My proposal points to empirical questions we ought to be investigating. Revisit briefly the rejection of objective value and what it means for those who would defend bad-difference views.